MND Musings - This is a record of a chronic illness, Primary Lateral Sclerosis, a Motor Neurone disorder, like a slow MND / ALS. My body may not be very cooperative; in fact it's become as stubborn as a donkey, but I'm not dead yet.

Friday, 27 June 2014

Court discussions of life and death

I know it won't be the end of the story, but I was pleased, if not surprised, on Wednesday that the Supreme Court dismissed the appeals of Paul Lamb and Jane Nicklinson and upheld the DPP's appeal against "Martin's" demand for more definition about assisted suicide. Having met him I am aware of how painful and frustrating Tony Nicklinson's life had become, but demanding an effective change in the law to enable doctors to end life, in other words to legalise euthanasia, would be in my view to open the door to a world of danger to vulnerable people of all ages.

The spin put on the verdict by Dignity in Dying (formerly the Voluntary Euthanasia Society), I imagine, was that it was all about the Court saying Parliament must get on and clarify the issue (which 2 of the 9 judges said ought to be done now, 3 out of 9 said sometime, and 4 disagreed). After all Parliament has discussed it a number of times in the last ten years. In truth the judgement upheld the law as it now stands. However Lord Falconer is putting forward the second reading of a bill to legalise assisted suicide for terminally ill people on 18th July in the House of Lords. That bill would not help people in Paul Lamb and the late Tony Nicklinson's situations, as it would apply only to people with a confirmed prognosis of less than six months, but its champions are keen on it partly because it would erode the principle of the sanctity of life enshrined in law.

Recently I was asked to write a short piece for a photographic exhibition. This what I wrote.

'“Everyone
knows they’re going to die one day

but society tries hard to duck it

so we need stubborn truth-tellers who
will sparkle and shout

before
they kick the champagne bucket.”

(Kate
Fox on Kate Granger)

I
imagine almost everyone who receives a diagnosis of a terminal condition
experiences some moments of fear. I was no exception. I was diagnosed with
Motor Neurone Disease in the same year that Diane Pretty had died in the
publicity of her court cases. I was under no illusion as to what MND meant. I knew
it was life-limiting and life-ending. In particular I had fears about the
manner of dying I could expect. These were fuelled by the campaign surrounding
such people as Ms Pretty, which portrays those with similar conditions as
'sufferers' and 'victims' and drip-feeds horror stories to the media - with the
effect of exacerbating public fear.

The
campaign for assisted dying/suicide feeds on and fuels our fear – our natural
fear of pain, of dying, of the unknown. It destroys hope and trust. And that is
toxic to society.

The
disabled, chronically ill and the elderly experience another fear – of being
regarded as disposable burdens. Of course there aren’t yet calls for us to be
'put down', but it's not hard to see how that might be offered as a 'treatment'
– saving medical and care costs.

Don't
mistake me. MND, as a newly diagnosed friend recently observed to me, is a
'bugger', as are other neurological and terminal diseases. I suppose, for that
matter, most dying is too - which of course none of us avoid.

In Yann
Martel's remarkable novel, The Life of Pi,
the turning point for the 16-year old Pi Patel, alone with the terrifying
Bengal tiger, on a lifeboat in the Pacific Ocean

comes
with a discovery.

'I
must say a word about fear. It is life's only true opponent. Only fear can
defeat life. It is a clever, treacherous adversary, how well I know. It has no
decency, respects no law or convention, shows no mercy. It goes for your
weakest spot, which it finds with unerring ease. It begins with your mind,
always....

'...
Every part of you, in the manner most suited to it, falls apart. Only your eyes
work well. They always pay proper attention to fear.

'Quickly
you make rash decisions. You dismiss your last allies: hope and trust. There,
you've defeated yourself. Fear, which is but an impression, has triumphed over
you' (chapter 56). It's as he accepts the
tiger's presence, loses his fear and starts to befriend it that he discovers
his ultimately successful survival strategy. 'And so it came to be: Plan
Number Seven: Keep Him Alive.'

In
her blog Dr Kate Granger addresses her advanced cancer. “Being positive though, through tear-filled eyes there are also some
exciting things I really want to live for on the horizon. I’m not going to let
you stop me achieving those goals.”

Call
us “people with MND”, not “sufferers” or “patients”. We’re not victims. There
is still life after diagnosis, however short or long. It’s still an adventure.
We’re not dead yet.'

This Bill to legalise "assisted dying" - meaning assisted suicide - will be debated in the House of Lords on 18th July 2014. There will be a free vote because it is not government legislation. If passed, this Bill would place vulnerable people at serious risk. Please write before 18th July to a Peer to tell them your views, especially if you have direct experience of caring for a dying person, either as a family member or as a health or social care professional. For more information, including details of how to write to a Peer, please visit www.catholicchurch.org.uk/assisteddying- bill IT IS VERY IMPORTANT TO WRITE AS SOON AS POSSIBLE AND CERTAINLY BEFORE 18TH JULY. The Bishop has asked that every Parish has a Holy Hour the day before the bill goes to the House of Lords. There will be a Holy Hour on Thursday at St Edward’s from 2.30pm-3.30pm.